Wow it pays to stick to your guns

Wow it pays to stick to your guns

So an update on the clinic visit. I suspect that the registrar may have had a very big talking to from the head of rheumatology, who is my rheumy. So I have a new diagnosis, psoriatic arthritis possibly spondyloarthritis. I showed her the MRI of my right foot and said as you can see I have bursistis all over the place, along with the other things going on, which would explain the pain in my feet, obviously not from fibro, it is real! So after nearly a year and a bit I am allowed to take a short course of steroids while I wait for the TFN script to come through instead of just toughing this out like I have been for over a year,

Thank you everyone for your support, it makes me feel like I am not going mad when others have experienced the frustration I have. People who haven't been through this sort of thing have no idea just how frustrating and soul destroying it can be battling to get listened to. So keep your invisible armor on and Cheers. If I drank I would have a glass of a wonderful cab sav!

37 Replies

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  • Oh good. Glad you're finally getting some answers. Good for you for sticking to your guns. I was diagnosed with spondyloarthritis in October, started anti-TNF treatment in December, and it's made a big difference to me. Fingers crossed it'll be the same for you.

  • I really hope so. I have had enbrel and it was great while it worked, then 4 shots of humira but it may have caused a heart issue so had to stop it. They have prescribed cosentyx so I guess I will wait and see.

  • Well done for sticking to your guns it just shows it's not all in our head as some health professionals should have us believe at times

  • Yes too true. My thought is that my rheumy had already decided to go with that and told the registrar what to do as she had everything there. Glad I told her last year I didn't accept her diagnosis of fibro and been stuck there. Makes me wonder how many people get put in that box by lazy diagnosis. Squeaky wheels and all.

  • Good for you darling. A lot of our medics lack bedside manner and it should be taught in training. I am pleased you have some answers.xxxx

  • I am glad after a year of really no treatment I may not have to try and get through another winter almost wanting to die of pain. It is very cruel. Hope you are ok.

  • Wey hey !!

    Result Someonesmother

    Well done for sticking with it it - it paid off.

    Crusee

    XX

  • Thanks. Yes it did. I feel for people who aren't as determined and bolshy as me who walk away knowing the dr is wrong and just suffer. There must be a better way.

  • Excellent news. Hope your feet are pain free very soon xXx

  • With the $2,000 I am spending on them for orthotics and the new drugs when they start working when I start them, I am really hoping so. Thank you

  • Glad you had such a positive outcome.

  • Yes me too. I was civil and polite but I could tell she had been told what she had to do. I would say my rheumy gave her instructions. Having my right foot mri results as proof also helped.

  • That's fab news - and just like you I had to demand to get a second opinion from another gp before I finally got a referral to the right dept(rheumatology). You have to stick to your guns unfortunately, because the staff are so overworked(or so we keep hearing.... I beg to differ with my gp's surgery) that they're literally doing anything they can to pass the problem onto someone else,wether it's the right person or not😤 At the end of the day,it's your body,and you know if something feels right or not,so you are the only one that can truly fight your corner as it were - well done for having the strength to carry on,because I do know how debilitating it can be.... and how sometimes you just want to think sod it,I really can't handle the stress anymore,and how much easier it would be to just try and muddle on,as we're so good at doing nowadays. Let's hope that now you've got you're diagnosis at last,that once the meds start you finally get some long awaited relief from the pain

    Nicki x

  • My gp is fantastic and has supported my all along. He knew thete was more to it. I agree there needs to ne more advocacy for patients who get rude or incompetant or arrigant or lazy drs. I felt like giving up on many occassions but I just kept pushing because I knew in my gut it was not in my head.

  • Good on you - I suffered the best part of 8 months worth of gp visits and endless blood tests because apparently it was always just a virus,even though every single test came back clear and I couldn't actually remember the last time I'd picked a virus up - I'd always been generally healthy upto that point.... it was when he'd obviously run out of ideas and said he was referring me back to my back surgeon(I've had three ops in 3 yrs due to degenerative disc disease... or that's how it started) and I knew full well the difference in the symptoms,and also my back couldn't be responsible for my hands/wrists or elbows being as sore as they were - that's when I lost it with him. Luckily,the gp I saw after,and another I use when he's busy or away ARE absolutely fantastic now,and have written god knows how many letters/referrals for my case since then - thank god for the ones that are genuine and do have the patients best interests at heart. So many get lost in the system or tarred with the same brush as the minority,who are literally just getting numbers through doors.... as with every system,it's always the minority that give the good /genuine ones a bad name😤

  • Yep too right. When this startedover 5 years ago I had a referral to an infectious diseases dr who tried to write it off as fibromyalgia. I refused to accept that diagnosis so he referred me to rheumatology rather sarcastically. When my rheumy talked to me he said no I think you have Ra or lupus or something similar. The infectious diseases dr had to swallow his diagnosis and looked very sheepish. I think often fibro diagnosis is used as the junk diagnosis when they can't figure it out so people suffer needlessly

  • Yep,that's definitely not the first time I've heard that mentioned as an 'excuse'.

    Right,I'm off for a bit now as I need to get some sleep.... I think I had about 1 1/2, hrs last night,resulting in me being awake since about 1ish.... tired doesn't come close 😴

    Hope you have a good day,it certainly seems a lot brighter out there today.... or so it sounds by the way the birds are singing... I can't see through the blinds and blackout curtains 😝

    Night

    Nicki x

  • Night time here and we are all copping the end of cyclone Debbie. It's a bit wet! Hope ypu sleep, I have the same problem. I get about 4 to 5 hours a night get up, go to work and come home exhausted

  • Omg - I didn't realise that's where you were located. It must be terrifying having that sort of weather so close?? And we think we get it bad when it's that bad an old tree falls?!

    Luckily I don't have your problems anymore.... in some ways it's lucky,in other ways I hate it. I took voluntary redundancy when they were remodelling the company again after struggling along for about 18 months.... that was back in Jun 2015 - I did well in the sense that I'm only just using the last of my payout now,and that's without me really watching what I've been spending, although maybe I should've and it would've lasted longer,but I definitely don't miss the not sleeping,getting up exhausted,the 60 mile drive each way,and then going to bed pretty much as soon as I got in again,but now I do miss the routine(mind you,a silly me thought I'd only need to be off for about 6 months before I'd be 'all better again... how naive?!😂) ,because for the first time since I left school in '89,I actually have no reason to get up,other than to feed the cats(that was a huge part of my reasoning for getting my dog) but with her having to be so small so that she couldn't pull me over,she has truly turned into the companion dog she was bred to be,and now I'll wake up during the day to find the tv sound bar has turned itself off from where I muted it for the adverts(a huge pet hate of mine😝) and Minnie will just be lying amongst her pick of the days toys,at the foot of the bed,watching a silent tv,but totally engrossed🐶😍 I'm hoping that once she's reached maturity,and I can take her for proper length walks(her bones don't fully form until she's 8months old,so it's only teeny walks a day until then) then we can go off exploring different country parks.... I joined the wildlife trust before I got her for that exact reason,and she has her car seat, complete with harness clip,already in the front seat so that whenever we go out she's used to it..... infact the puppy class love the fact that she turns up in her own 'chariot' rather than on her own feet,but it's quicker and easier that way 😂

    Hope you get some well earned rest,and that the weather picks up quickly for you(I don't watch the news/weather programmes here as a rule,mainly because my life generally has enough misery in it that I don't need to see more,yet when I was working that was part of my routine.... eat dinner while watching at least one news programme 😊 Oh well,I suppose I'll get back into work at some point,although I have already admitted that I'll prob never be able to go back to the industry I was in as it's too demanding,but some part time work locally when my body can cope would be a great way of starting a routine,and life up again😊

    Have a good day

    Nicki

  • I have been working since I was 15 I am now nearly 58. I have to keep working as I don;t have enough superannuation to retire and I think I would go quietly mad if I didn't hahahah I am a bit of a live wire when it comes to organising and doing things. On my really rough days it would be lovely to be able to lie in bed, especially at the end of the week when I have run out of battery and need to recharge.

    I am lucky that I live where we just get a bit of rain and wind from the cyclone nothing like what the north copped and is still copping.

    Your puppy sounds like a great companion. I sometimes think I would like another pet but at this point it would be one more thing I have to look after and I just don;t have the energy.

    Sounds like you two are going to have a lot of fun together.

  • Thanks Someonesmother

    It took me months of research into getting a dog,as I'd not long gone from being pretty much housebound for the year previous,and as I've always grown up with large breed dogs(GSD ,Doberman crosses and our smallest dog was a very large example of a pedigree English springer spaniel - he must've been as round as he was tall,but 30odd years ago you didn't hear about dog nutrition like you do today,and he lived to be about 15,so obv enjoyed himself too?!😝) But I needed something that was small enough to do no damage if they pulled me over(my mum's lab pulled me on the ice a few years back and it took me 6mths to recover) plus the dog needed to be small enough so that in my worst days,I could still give her everything she needed too,and that's how I came to picking a Maltese - they're got such great temperaments that they pretty much fit in with all family types,and are often used as therapy dogs too. This was my first dog that I'd ever owned on my own since being an adult,I'd only ever had cats before because of work commitments - and I do know that I have to go back to work at some point as I definitely can't afford to retire almost 20yrs earlier than I should,but until I can have at least a month or two of a routine where I can definitely get up in the mornings,I can't commit to anything - like I said previously,I thought I'd take redundancy ,bank the money,take 6 months out to get my health back on track,and then go back to work,oh how naive that sounds when I say it out loud now😳 Instead,it took almost three years to get the right drug regime to work for me,with me suffering just about every side effect listed on every medication I'd taken upto that point,then just as things get back on track,and I start to make plans again,and can see the light at the end of the tunnel,someone very kindly rear ended my car whilst I was stationery in traffic.... hmm,6 months later and I'm still needing almost weekly Physio to help me get over it,plus the feeling that I'd had the rug pulled from under me sent me spiralling downwards for quite some time too...,, if it wasn't for the dog I think I would've turned into a cat at that stage,as all I was doing was getting up,feeding them,taking my meds then falling asleep for almost 20 hrs,as if I were a cat 😩Minnie truly has saved me in the fact that even if it's just to nip to my mum's to have doggy playtime with her three(a lab,springer and a shipoo) or just to nip out to the park that's almost directly over the road to me,she gets me out of the house,and gives me something to focus on,and obv she needs her routine too - plus the puppy classes are a great way to socialise for me,as my so called friends all disappeared once I got too ill to drive them anywhere,or basically be their dogsbody(that's how it feels anyway). Sorry for the long message,I didn't realise I'd written quite that much... oops😳

    Hope you're having a better day today

    Nicki x

  • Well you have made it this far so you are obviously very strong in lots of other ways. I hope that life will get better for you and that the medications work. I have had similar issues, reactions to nearly every DMARD and then enbrel just stopped working and I suddenly got heart issues when I took Humira. So onward and upwards, we can do this. :)

  • Thank you - just the boost I needed this morning after only about 1/2 hrs sleep last night😔💤

    ,I needed to get up early for my orthotics appointment - I was a few minutes later than planned,and as I was trying to get down the stairs I managed to get my foot caught in my other trouser leg and fall.... so not only did I fall down the stairs(luckily Minnie was in my arms,and she didn't have a clue anything had happened) but I had her bowl of biscuit sitting on top of my handbag.... well that obviously went everywhere.... I was still picking biscuit out of it when I was in the hospital waiting room😂 So to top it off,I've had no sleep,tripped down the stairs,thrown a bowl of dog biscuit in my bag,and down an open plan staircase(no doubt I'll be finding it forever more) and then hurt my left hip and right leg like mad in the process.... hmm,something tells me that I need to get the bubble wrap out,wrap myself up,take some painkillers and not move for the rest of the day?!😜

    X

  • That's brilliant! At last a diagnosis and hopefully the correct medication coming soon. Good luck.

  • Well another diagnosis, which hopefully the meds will work. I live in hope!!!!!

  • At long last! Perseverance pays off but still, it might have been less of a battle had the Registrar acted appropriately sooner. I'm pleased as well that your Rheumy followed up on your complaint & hope she doesn't return to form.

  • Thanks NMH. I don't think she will as I think he will be monitoring her closely. He gets the final say on whether she passes or not, so I guess she will be following his instructions to the letter.

  • I'm so happy for you and hope that from now on it's up and up. Don't be a stranger though. Pop in from time to time and let us know how you're getting on. All the very best.

  • Thanks St Bernard. I do pop in from time to time. Just had a lot on with m,y family over the past few months. I joined here a few years ago before I was diagnosed with sero neg RA. It has been a little battle for the past 4 years trying to get it sorted.

  • Glad for you!

    I was in agonising pain for years before anyone would listen. It was virtually impossible to walk. I had bilateral Achilles tendinitis, toenail dropped off, so stiff I could barely move. Wasn't until my inflammatory markers shot up that I was listened too.

    I think folks who are seronegative have a pretty tough time getting believed. It stinks!

    Glad you've finally been listened to.

  • My rheumy tried, it was the registrar who was the issue. She just wouldn't listen to me. Anyway let's see what this new drug does and see if it makes any difference.

  • Wonderful Result! Congrats, here's to being pain free!

  • After 5 years that would be wonderful! :)

  • Really pleased for you. What a releif to get that right diagnosis so you can get correct treatment and start living again. You have gave me determination to kick ass.

    Bear wishes

  • Well it's the diagnosis for now and if the meds work then I am happy. I want people to take some hope from what I have been through and not give up. Too often we just walk away and feel defeated. I write letters, send emails and have conversations. I am like that little dog that keeps yapping at your heels, eventually you have to deal with me properly.

    Good luck I hope you take some strength and fight for what you know is right.

  • Love your theory and strength. I like the little dog bit. Will think like a terrier. Do hope the treatment works. That is the most important thing.

  • I guess I will wait and see on the treatment front. I should have the fist dose in about 5 weeks. Ugh I am flaring so badly at the moment and the weather has just decided to turn cold after having 30c days. I will be counting down those weeks that's for sure.

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